“After 10 days, I saw immediate results, she was more coherent, her speech was coming out,” Nouri said. “I’ve had her in speech therapy since she was 24 months old. All of a sudden she was speaking in sentences.”

Nouri never wanted to give her child marijuana.

“I was concerned, but you have to weigh what your options are,” she said.

Doctors planned to remove part of Kiana’s brain without a guarantee the drastic measure would work, Nouri said.

Her daughter’s first seizure happened at 4 months old, they increased in frequency and intensity as she aged. The constant convulsions left Kiana developmentally stunted.

The Northridge family tried everything as Kiana’s seizures worsened. The neurologist would add one medication, then another.

“We were on a combination of three medications at one point,” Nouri said. “She was all drugged up, still having seizures.”

As the family prepared for surgery, Nouri heard the first stories about Charlotte Figi in Colorado.

Last year, 5-year-old Charlotte became the poster-child for an oil extracted from cannabis that treats seizures and cancer for adolescents and adults. Charlotte’s Web, the strain of sativa named for its first patient, produces high amounts of cannabidiol, or CBD, but low amounts of the psychoactive compound tetrahydrocannabinol, or THC.

A person taking CBD gets the medicinal effects of cannabis without the intoxication, some doctors claim. The medication is extracted from the marijuana plant using a rotary evaporator, mixed with olive oil, then ingested.

A beacon of hope

In Colorado, Charlotte’s seizures went from hundreds per day to two or three per month. Doctors viewed her success as anecdotal, but parents saw it as a faint light in a sea of darkness. Families moved across the country, relocating from states without medical marijuana programs. The number of people wanting Charlotte’s Web, the strain created by the Stanley brothers, skyrocketed as national attention on Charlotte’s success drew desperate families.

Now, the nonprofit Realm of Caring Foundation manages the patients, prescriptions, research and advocacy for Indispensary, the brothers’ for-profit marijuana operation.

Heather Jackson, the mother of the second patient to use Charlotte’s Web, serves as executive director.

“If you’re looking at cannabis as therapy, you really have been through all of the traditional options available,” she said. “No one wants to give their child cannabis.” Jackson saw the change firsthand. Her son, Zaki, just reached 17 months without a seizure.

The 10-year-old started using CBD in hospice care.

“Now he’s learning,” Jackson said. “He knows his colors, he is writing his name, he’s riding a bike, he’s playing video games. He is so enjoying life and we are so enjoying this time that we have.”

Nearly 200 children use Charlotte’s Web, according to Jackson. There are 2,000 people on a wait list, she said.

Research needed

CBD’s effect on seizures has little supporting research because of marijuana’s classification as a Schedule I drug, which lumps it with heroin. Cocaine is a Schedule II drug. The federal government states Schedule I drugs have no medicinal qualities, but in California, a person can legally acquire marijuana with a doctor’s recommendation.

The reports of miraculous turnarounds paint a compelling and emotional story, but the science is lacking, said Dr. Raman Sakar, chief of pediatric neurology at UCLA. The lack of research on CBD makes it hard for him to compare it to the studies done on THC-heavy marijuana, he said.

“We know that frequent and prolonged seizures all the time affect the brain,” Sankar said. “But if you can, for some reason, lower impairing medications and lower seizures, I think it is pretty fair to expect that the child is better off, not only from the point of view of safety, but in the overall function — the quality of life.”

Sankar sees patients who use CBD, but he said he would not write a prescription for it because it is not FDA approved.

“This oil, when used under the tongue, it seems to benefit some of these children well beyond what doctors like me have been able to prescribe them,” Sankar said. “You can not dismiss these reports, but that’s not how we do medical research.”

CBD drugs lack consistency, one bottle may have more or less CBD than the next, Sankar said. It needs clinical testing before he could support it.

Part of the problem with CBD drugs comes from the lack of testing by dispensaries. Families often have to take the drugs to a third party to check for pesticides and for THC.

A limited supply

When Realm of Caring California opened in Los Angeles in December, the group selected Kiana as one of 26 to receive the oil extracted from Charlotte’s Web.

A year ago, Realm of Caring California’s director Ray Mirzabegian quit his job teaching to grow Charlotte’s Web for Emily, his epileptic daughter, and other California families.

“She’s tried 13 medications, she failed all of them,” Mirzabegian said. “None of them helped nearly as much as this oil, or CBD, has helped her. I wanted to have it readily available here to make sure we have access to it.”

The wait list in California is nearly 500 and still growing, he said. The foundation limits its number of patients to avoid cutting off someone after they start.

“Once they start patients on the oil, then the patients have access to the oil for the rest of their life,” he said.

California limits collectives to 99 plants per facility. It takes four to five potent plants to produce a year’s supply for one patient, Mirzabegian said.

“You’re looking at several different leases, several different expenses,” he said. “It financially makes it extremely challenging; we’re doing everything we can to make it available as soon as we can.”

Realm of Caring expects to expand access to rest of the families by the end of the year, but the wait list continues to grow.

Tamara Horak’s son, Tyler, went on the list in August. The 19-year-old’s seizure started in the womb.

“I have no idea what cannabis can do to a child’s growing brain, but I do know the damage that is done by hundreds of daily, uncontrolled seizures and the awful side effects that come with all the drugs that doctors prescribe to treat them,” Horak said. “RoC offers us the only hope left in stopping Tyler’s seizing. I wish we had this opportunity and knowledge when Tyler was a baby. Maybe, just maybe, he could have had a normal life, normal development, normal hopes and dreams. Now the most we can hope for is to make whatever time Tyler has left as comfortable as possible.”

The move should not affect the patients. The threat has parents pannicked.

Many, like Nouri, expect politics to cut their child off.

“Every morning I wake up, this is what I’m afraid of,” Nouri said. “They have no idea what we go through on a daily basis. They have no idea how difficult it is to watch your child seize in front of you.”